I am, as of this week, officially off any MS drugs (No to Rebif, no to Avonex, no to Copaxone, and no to Betaseron). After all the trouble I have been having recently with drug reactions (see prior posts), I was taken off of Rebif temporarily in early June, with the plan being to see my MS Neurologist at the and of June for re-assessment and creation of a new plan.
Within about 8-10 days of being off the Rebif, my friends, family, and co-workers began to notice that I seemed much more alert and mentally sharp. As my sweetie Kim said (in his ever eloquent way“Honey, you are firing on all cylinders again!” My best buddy kasey said “You are you again! Perky!” My swelling (edema) went down significantly too, but did not fully disappear, as I was still having bouts with it. As of a couple of days ago, I am also done with Lyrica (my pain med), since my other neurologist at the NS rehab centre noted that side effects of that are weight gain and edema too. My edema is diminished almost completely now, and I feel so clear headed, despite the return of the pain. I am starting to feel like ME again…and that gives me hope that I can shed the medically-induced weight once again, as well as giving me re-newed hope for my ability to continue working a good long time as a contributing member of the work-force. (This is a big one for me, because my self-esteem is strongly tied to my ability to be fully independent - including financially.)
I prepared for my late-June my medical appointment with my primary neurologist like I was getting ready to go to battle. I was ready to go in there and fight to keep OFF the drugs. Well, lo and behold, before I could even take a deep breath to launch into my prepared speech, my doc said that I should just say no to any more drugs! Wow! We were on the same page. After reviewing all the various MRI’s, cognitives tests, lumbar puncture results, and now the latest reactions and troubles my body was having with the meds, Doc was of the opinion that the cure was worse than the disease.
Tumorific, or tumefactive, multiple sclerosis is rare enough that they really don’t have too much research on it. The little literature that is out there about it reports that tumefactive MS often shows negative or inconclusive results on lumbar punctures (mine were positive) and often presents with minimal developments or progression after one exacerbation.
In looking at my recent results and the course of my MS disease over the past few years, the thinking is that my MS should be relatively stable. I presented as relapsing-remitting earlier, but once I shed the 80 lbs that Copaxone helped pack onto my form, my symptoms remained fairly stable (though on-going) with fewer clear exacerbations to specify. The cognitive issues and vertigo, as well as the pain and fatigue, showed as steady decline. The recent turn-around cognitively and even fatigue-wise has us thinking that the drugs were causing more problems for me than the MS itself! The plan now is to keep me off the MS treatment drugs, and use Sativex for pain as required until I find my balance and clear my system of the muddying effects the drugs had on me. We will then do another cognitive testing battery, and my MS lesion will be monitored by yearly MRI’s to ensure it remains stable.
I am absolutely thrilled to be off the medications! Even though my pain and fatigue remain significant issues, I feel like I have my “marbles” back. I also feel that I can now successfully tackle the medically-induced weight gain and get the weight off me sooner rather than later. The weight is bad for me too - creating its own secondary issues such as more pain, joint problems, fatigue, acid reflux, and more. My body simply cannot tolerate too much weight on my frame. So, though I have some hard work ahead of me, I am determined, and more motivated than ever.
So here we go, down a new path, into relatively unexplored territory of tumefactive MS management. Wish me luck - and stay tuned!